A self-rating body image questionnaire was developed for assessing body-image-related aspects among patients with breast cancer. The items contained in the established item pool were adjusted regarding body image characteristics [14, 15], the theoretical framework of body image in a breast cancer context , a literature review [4, 13, 33, 34], and in-depth discussion among research team members. Combining the theoretical framework with research on body image in breast cancer settings led us to generate seven subscales reflecting body image from the viewpoint of female patients with breast cancer: psychological change, behavior change, arm functioning, sexual activity change, role change, self-cognition, and social change. This final measure specifically addressed the needs and concerns of Chinese mainland female patients with breast cancer by considering their culture, consulting with Chinese specialists working with breast cancer patients (i.e., Delphi method), and conducting a pilot cross-sectional survey with the target population.
The self-cognition regarding body image subscale was designed to reflect the general self-awareness of the patients on their own self-appearance [1, 14]. It involves mind, satisfaction, belief, expression, being sexually charming, and certain parts of body concentration on body image. However, the items, thinking of my nude self as sexually charming and thinking that certain parts of my body should be hidden were excluded after the first-round survey because the experts considered the two items as less important; the latter also had poor validity. The item feeling other people are looking at my chest was moved to the body-image-related psychological change subscale since it reflected more information about psychological alterations.
It has been widely acknowledged that patients with breast cancer show subsequent behavioral changes following a disruption of body image, including concealing their chest, avoiding changing clothes in public dressing rooms, avoid bathing in public showers, fear that other people are looking directly at their scar, and are concerned with the appearance of their chest [4, 13, 14, 16, 34]. All these aspects were contained in the body-image-related behavior change subscale, except for two excluded items after the second-round survey due to unsupported validity assessment. Furthermore, one of the excluded items, trying to hide my body while changing clothes alone, was deemed unnecessary by patients since they felt that it is unnecessary to conceal their body while changing clothes alone. The other excluded item, trying to avoid looking directly at the surgical scar, was considered as having somewhat malicious connotations and thus led patients to become more anxious about their illness .
Given that lymphedema, which is related to breast cancer, is a common and severe, adverse effect following surgery , the body-image-related arm functioning subscale was devised to evaluate body image towards arm appearance, including normal arm feelings, satisfied arm appearance, and the influences of arm swelling and pain on daily living. After the first-round survey, distressed with the appearance of my arm was excluded based on the recommendation of experts in that it may be not suitable to those patients who have bilateral breast cancer.
Sexual activity change is widely known as the most common adverse consequence following body image impairments in patients with breast cancer . The related changing activities in sexual life were assessed in the body-image-related sexual activity change subscale (e.g., a loss of feminine charm, avoiding close body contact, covering breasts during sex, sexual confidence/desire, and sex life quality). The items addressing these aspects showed valid results, except for one item: trying to avoid close body contact with others (e.g., embrace), which moved to the body-image-related behavior change subscale since it is more likely a behavior alteration.
Based on published reports, patients with breast cancer also experience role changes after suffering from body image impairments including premature termination from work; inability to do preferred things; and role transformations in the family, at work, and in society . The items belonging to this subscale were appropriate; however, the item body image change influences my role transformations in family, work, and society was revised to two additional items (i.e., body image change influences my original family role and body image change influences my original work/social role) to clarify the point.
Since the body image concept involves perceptions, thoughts, and emotions , psychological change has been reported as a key issue following body image alterations . In the subscale of body-image-related psychological change, feelings such as being concerned, comfortable, distressed, angry, satisfied, disappointed, and worried about body image were included. After the first-round survey, four items were excluded from this subscale, with two (i.e., angry with my own body and satisfied with my vitality after my body image change) being regarded as unimportant by experts, one (i.e., body image change controls my body) being considered as difficult to understand by patients, and one (i.e., satisfied with the appearance of my reconstructed breast/prosthesis) being suggested as not appropriate for those who do not receive reconstructive surgery.
An additional item, body image change influences my feelings/attitudes on self-appearance, was recommended by experts and added to this subscale to evaluate the feelings/attitudes toward self-appearance following body image disturbances. It also had acceptable psychometric results in the second-round survey. Additionally, the item caring about treatment-related body image change was moved to the body-image-related behavior change subscale due to a higher correlation between them. Another item, feeling comfortable with my body image while exercising was revised to feeling uncomfortable about my body image and moved to the body-image-related role change subscale because of the higher correlation between them.
The last subscale, body-image-related social change, was devised to assess the influences of body image impairments on social change of patients with breast cancer . After the first-round survey, the items trying to avoid participating in social activity and limiting social activity due to body image change had acceptable psychometric properties. However, their descriptions were not easy understood by patients; therefore, they were revised to trying to avoid participating in social activity due to body image change and having to limit social activity due to body image change, respectively. Both were well validated in the second-round survey. Due to a higher correlation between the item participating in routine activity as usual and the body-image-related role-change subscale, this item was rearranged to that subscale and revised as I cannot participate in routine activity as usual due to body image change to clarify the point.
Following the experts’ recommendation, a new open question, “Having a sex life or not? (yes or no). If no, why?” was added to the end of the BISQ-BC. It was designed to obtain more information about impacts of body image alterations on patients’ sex life. This question is just used as a qualitative item and will not be included in the total score calculation.
This study had a major limitation. Given the small sample size of patients with breast cancer in both rounds of the pilot cross-sectional survey, we could only use internal consistency reliability and convergent/discriminant validity for item selection. Other item screening methods such as factor analysis should be conducted in the future with a larger sample size. Furthermore, if Cronbach’s α values of 0.70 and above are deemed acceptable, the internal consistency reliability of five of the subscales (i.e., self-cognition, change in behavior, arm functioning, sexual activity, and role) need to be further tested with larger sample sizes as their Cronbach’s α range was unsatisfactory (i.e., 0.62–0.69).